Don't Give Up, And Don't Give In

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MidMichigan Medical Center - Clare

Clare, MI

For me, the symptoms of my autoimmune condition struck in the middle of the night as I was leaving work. I took a couple of steps out of the building and knew something wasn't right . It was October 2008. I got home at 2 am and could barely walk across the room. I don't know how I managed to drive home. I had weakness in my legs, chest pain, and a burning sensation at the base of my neck. That night marked the beginning of a long and frustrating journey.

I saw lots of doctors and got a lot of different opinions, from Vitamin B Deficiency to "it's all in your head." After several weeks, I was diagnosed with Vertigo and was told it would eventually go away. My wife, however, was not convinced. As the mother of 4 boys, 2 of whom have special needs, she has learned to trust her instincts, research, and take action. She is the advocate for our family. Something was going on and she had to find out what it was.

One of her first steps was to phone the physician referral line sponsored by MidMichigan Health. It was that phone call that would change our lives. That's how we got Dr. Khan's name. He did a lot of work to rule out major illnesses. It took a long time to figure out, but like us, Dr. Khan wouldn't give up. He has a passion for his work and his patients. We feel blessed to have found him.

My symptoms were puzzling and painful. I often experienced numbness, extreme weakness, fatigue, and a burning sensation. I also had to manage Diabetes and High Blood Pressure, symptoms that Betty suspected masked my other condition.

The turning point came when I experienced a major flare while at the doctor's office. Dr. Khan ordered a spinal tap. That turned out to be the critical test that led to the diagnosis of Mixed Connective Tissue Disease (MCTD), a very rare autoimmune disorder. In my case, my immune system was destroying the fibers that provide the framework and support for my body. MCTD exhibits symptoms of a number of autoimmune disorders, such as Lupus, Scleroderma, and Polymyositis, which can affect the joints, heart, and pulmonary system, causing muscle weakness, and skin & kidney diseases. MCTD affects fewer than 200,000 people in the US, the cause is unknown and there is no cure.

Up until then, we were just trying to manage the symptoms. We didn't know what we were dealing with, but knew what would help. The symptoms we tried to manage; weakness, fatigue, and numbness in the limbs, lead to other issues. If I stepped on something and cut my foot, I couldn't feel it. In my case, there are only a handful of medications that keep the flares at bay, including steroids and immunosuppressants, both of which can be accompanied by serious side-effects. Immunosuppresants weaken the body's natural immune system so I am more susceptible to illness and less able to fight infections. With 4 boys still in school, we learned to be careful, especially during flu season. The first thing we do when we come in the house is wash hands.

I am currently in remission; I haven't suffered a major flare in over 2 years. However, there is no recovering from the harm done by nerve damage. The weakness goes away when the flare subsides, but some of the damage is permanent. One day, I stepped out of the shower, things looked foggy & the fogginess never went away. Nerve damage has also left me almost deaf in my right ear. Once, I almost suffered liver failure. The symptoms are wide ranging and easily triggered. We've learned that Mixed Connective Tissue Disease can affect any part of the body, at any time, and to any degree. Many things can cause my condition to flare for example, changes in weather, a virus, or certain foods. Keeping a journal is very important whether one is seeking an accurate diagnosis or trying to manage flares.

Support is crucial. We have found online support groups to be a wonderful source of information, encouragement, and community. It was great to find people who are dealing with the same thing. It helps just to know you're not alone. Online groups are awesome! You have support available 24/7 around the world. It's very interactive. I can ask a question in the middle of the night and by the next day, I could have a dozen responses.

Diligence and faith keep our family grounded. God's provisions have been evident through it all. Don't give up & don't give in are words we live by. Don't give up looking for help and don't give in to the disease during the bad days. Good days will come again.

These submissions are individual opinions of patients based upon their own experiences. By submitting a story about a provider, you are acknowledging that you or a family member was or has been a patient of the provider. Once submitted, stories will be displayed publicly on our website. Since stories are individual opinions of patients, they should not be considered medical advice.